Emic and Etic Perspectives in the Construction of Authoritative Knowledge on Autism

Background: The distinction made in medical anthropology between an etic term ‘disease’ and an emic term ‘illness’, signifying the duality of the biomedical and the experiential phenomena (Good, 1977; Good & Delvecchio Good, 1980, 1985; Kleinman, 1989; Kleinman et el., 1978) is especially relevant to understanding how authoritative knowledge of autism has evolved since the demise of psychogenic theories. Temporarily putting aside the question whether autism is or should be defined as a ‘disease’, the value of the emic and etic distinction lies in explicating how the dialogue between the biomedical and the social science perspectives has engendered a system of knowledge and practices that is called ‘autism research’ today.

Objectives: In recent years, autism has been the subject matter of psychiatry, psychology, epidemiology, genetics, neuroscience and occupational science, but also of anthropology, sociology, disability studies, education, linguistics and philosophy. Although these disciplines employ diverse theories and methods, and interdisciplinary approaches and mixed methods are common, research on autism tends to cluster around the etic view of autism as a neurodevelopmental disorder (e.g. Amaral et al., 2008; Courchesne et al., 2007; Dapretto et al., 2006; Geschwind & Levitt, 2007; Hirstein et al., 2001; Kasari et al., 2008; Levitt & Cambell, 2009; Moldin & Rubenstein, 2006; Sigman & Capps, 1997; Striano & Reed, 2009; Volkmar, 2005) and the emic view of autism as a personal, family, and community experience (Angell & Solomon, 2014; Bagatell 2007, 2010; Grinker 2007, 2010; Grinker & Cho, 2013; Prince 2010; Kaufman 2010; Lawlor 2010; Maynard 2005, 2006; Ochs et al., 2001, 2004, 2005; Ochs & Solomon, 2004; Park, 2008; Solomon, 2008, 2010, 2013; Solomon & Lawlor, 2013; Sterponi 2004; Sterponi & Fasulo 2010).

Methods: As Grinker and Cho (2013) have agued, although psychiatric diagnoses are social constructions that are situated in social, historical, and economic contexts, the constellations of symptoms that these diagnoses signify are experienced as real and disabling by the affected individuals and their families independently of what diagnostic categories or clinical terms are assigned to these symptoms.

Results: Based upon almost two decades of ethnographic research that spans linguistic and medical anthropology and occupational science, this presentation explores the tensions between the particularities and uniqueness of individual and family experiences of autism, and the experience-distant notions (e.g. “heterogeneity”, “elopement and wandering”) that frame these particularities as part of a larger, generalized pattern.

Conclusions: The presentation will argue that this tension resides not only between the research arena and personal or family experiences, but as a ‘double vision’ (Mattingly 1994) in individual stakeholders’ perspectives on autism as both a biomedical condition/ syndrome/ disorder, and a lived experience and a way of being in the world.